Pages

Wednesday, August 25, 2010

What defines a hero? To me, it is someone who defies the odds, faces the enemy head on, fights with every fiber of their being, and wins. Look closely at this photograph. General David Petraeus is certainly considered a hero and one heck of a fighter. But I am not talking about him. My hero is Jennifer Griffin. I have had the privilege of getting to know this amazing woman over the last year and her friendship is something I treasure.

She faced down Triple Negative Breast Cancer with a battle plan where defeat was never an option. She stayed focused, positive, determined and lovely. She shared her fight with America and showed thousands of women who have heard they have the "bad" breast cancer that they can absolutely fight and win, but thrive when all the treatments are over.

A couple of months ago she told me that she wouldn't return to work until September. Jennifer, it is August 25th. I had presumed you would ease back into your job at FOX news. I forgot this was Jennifer. Not only did she return to her post early- but her first assignment was Afghanistan, interviewing General Patraeus. There she was, up there on the TV screen, back doing what she loves. She didn't miss a beat. And she looked stunning. (Oh, how I have missed seeing her earrings!)

Jennifer, you are my hero. You have given so much hope to so many women across the country who have seen you. Imagine the newly diagnosed woman who just heard yesterday that she has breast cancer, thinking her life is over, as we all do in those first, terrifying days. She turns on the television. And there you are. Chemo: done. Radiation: completed. Surgery: finished. A wonderful life: going strong.

Thank you for sharing your victory with us, Jennifer. If there ever was an embodiment of No Surrender, it is YOU.

Tuesday, August 24, 2010

There is a very interesting article from NPR today about the evolution of cancer becoming a cause. Pay particular attention to the "pink" section...Turning Cancer, Other Diseases, Into Causes
by ALAN GREENBLATT /NPR
August 24, 2010

The new Showtime series about cancer has an old-fashioned, euphemistic title: The Big C. It's gotten mixed reviews in part because critics find it implausible that the central character, played by Laura Linney, would not disclose her illness to friends and relatives.

"It doesn't seem believable in Cathy's case — she just seems too smart and articulate to deliberately withhold something like this," Hank Stuever wrote in The Washington Post. Today, it's expected that people suffering from a disease will make that fact known. Breast cancer, in particular, seems to be thoroughly destigmatized. Patients and loved ones wear pink ribbons, blog about their experiences and participate in races and walks to raise money for research.

Not every disease has become a cause. But it has become common for people to promote awareness of their illnesses and conditions by sporting bumper stickers and wearing T-shirts, wristbands and tattoos, whether they're concerned with Alzheimer's, autism, pregnancy loss or other subjects.

These various emblems are only the most visible symbols of a whole culture of patient information that today gets shared through websites and support groups. "It's a way of making it visible," says Susan E. Bell, a medical sociologist at Bowdoin College, "giving people some way of trying to destigmatize their conditions and to signal and make connections with people who might have or know someone with similar conditions."

No Longer A Dirty Word
This was not always the case. Before women such as first lady Betty Ford and NBC News correspondent Betty Rollin went public about their bouts with breast cancer during the 1970s, cancer was rarely discussed or "shared."

"Cancer used to be a dirty word," says Linda Layne, an anthropologist at Rensselaer Polytechnic Institute. In decades past, doctors "didn't even tell patients about it sometimes. It was withheld."

Several trends converged to make public sharing of patient information common, including the women's health movement, the rise of information technology and a shift in the medical culture itself away from a purely hierarchical system in which doctors were always assumed to know best. Patients, armed perhaps only with what they've read on the Web, now can be counted on to ask questions about virtually any condition.

"There's a sensibility in our culture that you have to meet a diagnosis with a whole set of questions that we didn't used to think we had permission to ask," says Victoria Pitts-Taylor, director of the Center for the Study of Women and Society at the City University of New York.

The Influence Of AIDS A lot of illness-awareness promotion, though, stems from the way AIDS patients responded to the rise of that disease. AIDS activists were determined to see the syndrome receive attention and research dollars. It became synonymous for a time with red ribbons and the slogan "Silence = Death."

That approach, Layne suggests, may have something to do with the fact that the AIDS epidemic came hard on the heels of the gay-rights movement of the 1970s, which was largely about gay people proclaiming that their identity was neither shameful nor something to keep hidden. The tropes developed with AIDS — clothing accessories such as ribbons, displays of commemorative quilts, marches on Washington — have all since been adopted by groups concerned with other conditions.

"Think Before You Pink"
Not everyone is enamored with this model for open display of disease awareness. Many patients resist identifying publicly with their diseases because they do not wish to be defined by them.

In her 2009 book Bright-Sided, Barbara Ehrenreich complained about the "pink sticky sentimentality" of pink ribbons and breast cancer teddy bears. Confronting the disease herself, she felt isolated by the "universally upbeat tone" of her fellow sufferers who she thought had been distracted from more important matters such as pain and treatment options.

Studies by business professors at Duke and Michigan have found that "cause-related marketing" often profits the companies who participate in disease awareness campaigns as much or more than the charities they are supporting.

"It's now very much transformed into a corporate venture and a merchandising opportunity," says Angela Wall, spokeswoman for Breast Cancer Action, an advocacy group based in San Francisco. "People are buying stuff that's pink, thinking it's going to a good cause, but because there's no copyright on the pink ribbon it can be slapped onto any product."

Breast Cancer Action, with its "Think Before You Pink" campaigns, calls out companies it argues are supporting charities even as their products are contributing to incidence of the disease. Such efforts, Wall suggests, represent hypocritical and misleading attempts by such companies to clean up their image.

"Enough awareness. More action," she says.

Ameliorating Real Pain
The whole panoply of patient awareness efforts — the T-shirts and the fundraisers and the homemade videos posted on the Internet — are now a hybridized blur between grass-roots efforts led by patients and promotional efforts instigated by industry groups and, sometimes, researchers themselves.

That doesn't mean patients won't find them helpful. Patients and caregivers often come to recognize each other as their own best sources of information about disease and treatment, says Pitts-Taylor, the CUNY sociologist.

"People who have an illness, or are caring for somebody, are creating these communities, what we used to call a subculture," she says. "They have an awful lot in common. Not just the biological fact of illness, but also the social experience of what that means and how it translates into everyday life."

Making plain the very fact of disease is a way of saying, "I'm not ashamed, I'm proud," says Layne, the anthropologist at Rensselaer. That represents a huge change in attitude and approach from a generation ago, she says, when people who had cancer or women who suffered miscarriages might "feel like freaks, like the only people on Earth this happened to."

"There's no way that losing a baby isn't going to be horrible," Layne continues. "It's at least better that you don't have to be ashamed of it. That's one aspect to thehorribleness of the experience that's really been ameliorated."

Monday, August 16, 2010

This is why we are fighting so hard with the Before Forty Initiative to get the word out to all young, African American woman about the importance of EARLY SCREENING. This study further proves what we have been saying for years:

✓African American Women are at great risk for developing Triple Negative Breast Cancer at a YOUNGER AGE than Caucasian women.

Please help us in our mission to save the lives of women who don't even know they have breast cancer, so we can help them live the longest, best lives possible. We need your financial support now. And we need boots on the ground to help us distribute our information pamphlets.

Yes, you can buy a pink stapler... and nothing will come of it. OR you can donate to the NSBCF and save someone's life.

You choose.

Study links African ancestry to aggressive breast cancer

Harry Jackson, Jr.

St. Louis Post/Dispatch

August 16, 2010

A recent study finds that African ancestry is linked to a more aggressive type of cancer that is more deadly.

Researchers at the University of Michigan Comprehensive Cancer Center in Ann Arbor found that, among women with breast cancer, 82 percent of African women had the breast cancer called “triple negative,” 26 percent of African-Americans had the variety, and 16 percent of white Americans had it.
Triple negative breast cancer is negative for three markers used to determine treatment: the estrogen receptor, the progesterone receptor and HER-2/neu. Recent advances in breast cancer treatments target each of the receptors, but targeting all three is a major problem, said Dr. Lisa A. Newman, director of the Breast Care Center at the University of Michigan Comprehensive Cancer Center.

“Outcome disparities are therefore likely to increase, because fewer African-American women are candidates for these newer treatments,” she said.

These results and results from prior studies indicate a genetic link for the form of breast cancer a woman might develop.

Prior studies have shown that while African-American women are less likely than white women to develop breast cancer, those who are diagnosed are usually younger and more likely to die from the disease. Other studies have shown a hereditary breast cancer risk associated with racial-ethnic identity — most commonly among Ashkenazi Jewish women.

Researchers looked at African-American women and white women diagnosed with breast cancer at the Henry Ford Health System in Detroit. Researchers also looked at African women diagnosed at the Komfo Anokye Teaching Hospital in Ghana.

Ghanaian women were diagnosed at a younger age than American women, with larger tumors, had more advanced cancer and were more likely to have the triple negative test results.

Researchers said the recent findings may help science find women predisposed to more aggressive and deadly cancers.

Saturday, August 14, 2010

“Most of the big shore places were closed now and there were hardly any lights except the shadowy, moving glow of a ferryboat across the Sound. And as the moon rose higher the inessential houses began to melt away until gradually I became aware of the old island here that flowered once for Dutch sailors' eyes-a fresh, green breast of the new world. Its vanished trees, the trees that had made way for Gatsby's house, had once pandered in whispers to the last and greatest of all human dreams; for a transitory enchanted moment man must have held his breath in the presence of this continent, compelled into an aesthetic contemplation he neither understood nor desired, face to face for the last time in history with something commensurate to his capacity for wonder.” F. Scott Fitzgerald, 1926

The Long Island of my childhood has changed. Growing up in Sands Point, where there were no manicured curbs, the lawns ran down to the edge of the beach road that led to our house. The remains of sea walls still protected the beach where the Hearst Castle once stood. The house Fitzgerald based Gatsby’s house on. Only the gatehouse, clock tower and walled garden stands today. On the other end of the beach stood the house he based Daisy’s on. A Stanford White, gleaming white mansion that is now about to be torn down and its rolling lawns turned into a subdivision.

My first school was Buckley Country Day and it was at the end of a long driveway off Shelter Rock Road. Our school bus passed ponds and deep woods and then opened to the clearing where the estate house that had become our school stood. Now, the children who travel to Buckley pass a condominium complex, the woods are gone and only one pond is left, reflecting the manor house on its surface.

My high school was in Locust Valley. The Friend’s Meeting House still stands on its hill, where the daffodils fulfill Wordworth’s poem every spring. It is a new Meeting House, but it was rebuilt after a tragic fire with sensitivity to what was. Salvaged nails and window panes were reused wherever possible.

In our senior year, we used to leave campus and have lunch in the abandoned playhouses of the closed estates which silently awaited their fates of the crashing of wrecking balls and earth movers. Sold for taxes, subdivided for plastic, miniature facsimiles of what they once were, creating a new world of McMansions.

Some estates were saved and converted to golf courses or art museums. There, the land is open, and one can still breathe. There were many farms when we were growing up. Saturday mornings would not have been complete without a trip to Youngs Farm or Filaski Farm stand. Filaski is gone now. And we almost lost Youngs Farm this winter. But thanks to the work of the North Shore Land Alliance, it was saved. Sitting in the courthouse waiting to hear the verdict was an anxious moment. Driving home past the fields, knowing it had been spared, you could almost feel the farm let out a collective sigh of relief.

It is not just the aesthetic that is being protected. The beauty speaks for itself and the legacy for our children, not withstanding, we need our open spaces for our very lives.

Long Island’s water comes from a deep aquifer. Massive development since the post war years, has affected this water supply. Whether the scientists will officially admit it or not, there is a direct link to our drinking water and our health. The breast cancer rate on Long Island is out of proportion with the rest of the country. What do we all have in common? What one factor do we all share? We all grew up drinking the same water. The more land we “develop” and the more open spaces we destroy, the aquifer will be tainted. What will the future of the children’s health hold for them if we let this happen?

Currently, there is a golf course that stands on a large area directly over the aquifer, that could not be saved. Plastic imitations of classic homes will carve up the land and the waste from each will seep deep into the earth. We will be drinking that water. So will our children.

If trying to keep the North Shore open and beautiful and saving what precious little is left of its original natural wonder is not enough to get you involved, then think of the health effects of congested, over-development.

I have had breast cancer twice. I lost two childhood friends to cancer. My sister has had cancer. Three people on the street where I grew up had cancer. As the founder of the No Surrender Breast Cancer Foundation, I see the numbers growing, not decreasing. Is it just a mere coincidence that the rates of cancer have risen along with the development of our Island?

To help save the open spaces of the North Shore of Long Island visit the Northshorelandalliance.org and if you would like to help us in our fight against breast cancer please go to our site, nosurrenderbreastcancerfoundation.org. To take a glimpse back in time, visit oldlongisland.org.

"So we beat on, boats against the current, borne back ceaselessly into the past." F. Scott Fitzgerald

Tuesday, August 10, 2010

In the words of my dear friend, Ferne, who lost her battle with real cancer, "Sometimes you just want to sit on the floor and shake your head." Ferne died of her cancer after fighting for years and being subjected to struggling for insurance coverage because hers ran out. The Breast and Cervical Cancer Act helped her a great deal. An incredibly kind and loving boss kept her employed, even when she had to miss more days then work them. She held other patients up with her quite grace and gentle prodding to "hang in there, girl."

Ferne didn't ask for anything from anyone. She gave and gave to all who knew her. I have never known anyone like her and will never meet another angel on this earth like she was. I treasure the friendship I had with her and work every day to keep her memory and dream alive.

What does a woman who is dying of breast cancer look like? She can look like you or me. Or, she can be the cliche that Ashley Kirilow attempted to portray in her scam to "get back at her parents for a dysfunctional childhood." Say what? Yes. Apparently, a spoiled, attention-seeking, twisted freak decided to shave her head and eyebrows and start a Facebook page to raise money to help her in her fight as she died of breast cancer. She raised over $20,000 and got a free trip to Disney World. The only problem was she doesn't have cancer, never did, and she lied to everyone she knew.

She raised $20,000 on Facebook?

I could go on and let you know what I think of this person. But, instead, I will let this list speak for itself. A list of the sisters we have lost in the last couple of years. May they rest in peace and know that they will never be forgotten. Miss Kirilow, however, will be.

CANADIAN WOMAN FAKES CANCER TO RAISE MONEY FOR HERSELF
The Digital Journal
A 23-year old Canadian woman is under arrest arrest for impersonating a dying cancer patient, and bilking $20K in donations from people who bought the charade. Apparently, she wasn't that good of an actress.

Twenty-three year old Ashley Kirilow who went to extreme measures to fake having cancer, including shaving her head, starving herself and plucking her eyebrows, was arrested on Friday. The New York Daily News reports that Kirilow, of Burlington, Ontario allegedly bilked family, friends and strangers out of $20,000 for her phony charity, which she said would fund cancer research. Kirilow turned herself in on Thursday and now could face up to two years behind bars. She told the Toronto Star that she faked the illness to get back at her family for her dysfunctional childhood, which included her parents battling over her custody.

"I took it as an opportunity to make my family feel bad for how I was treated."

For over a year, she convinced volunteers to arrange benefits for her and even persuaded a cancer-awareness group to send her to Disney World. She even had her knuckles tattooed with the words "LOVE LIFE" and "WONT QUIT." The lie began in late 2008 when Ashley was treated for a benign lump in one of her breasts. After that procedure, she began telling people she not only had breast cancer, but liver cancer, stomach cancer and ovarian cancer, all at various stages and in different combinations. She told people she only had a few months to live. Kirilow said she'd like to pay back those she had taken advantage of. But as for the scammed cash, she said she'd already spent it all.

"I made a really big mistake and it's no ones fault but mine."

Everyone who gave to her did it in cash, and nobody asked for a receipt. Her charity was never registered and consisted of nothing more than a Facebook page. Over the course of a year, Ashley persuaded a legitimate Toronto-based cancer-awareness organization, led by Newmarket skateboarder Rob Dyer, to fly her to Disney World. Their response to the turn of events,

“Skate4Cancer’s involvement with Ms. Kirilow was based solely on fulfilling what the organization believed to be a legitimate final wish from a terminally ill individual.”

Ashley's friends and followers say they are shocked, betrayed and furious. But her parents are not surprised, saying the latest allegations follow a behaviour of hers since she was a child. Ashley is manipulative, craves fame, and uses people to get what she wants. Her father, Mike Kirilow, a self-employed home renovator says

“She loved playing the victim. Because it gave her control over people.”

Monday, August 9, 2010

It has been a tough few months at the foundation. We have grant and funding requests out there and some we are still waiting to hear from. One extremely large corporation promised us a grant, cut it by an eighth, told us the "check was in the mail" and it never came. Neither did any responses to our inquiries as to the whereabouts of said check. Yet, today, they are funding a large organization's outing... this large organization has more money than God and continues to tell women to wait until 40 to get a baseline mammo. A stellar recommendation that has lead to more advanced cases of breast cancer than any other. And because they are so big, insurance companies use them as their basis to refuse a young women screening because "they said not until after 40."

Our request for funding was to promote our Before Forty Initiative. The initiative that is working every day to let young women know that waiting until forty could mean the difference between life and death. How do we know? Because we are survivors. We have seen our sisters die because they did not get early screening and subsequent early detection and died because of it. We are trying to spread our outreach to college campuses, health clubs, social networking sites, anywhere young women will see our message:

Get that early screening. Learn about Triple Negative Breast Cancer and your risk for it if you are African American.

But, no. This Corporation basically lied to us and is funding a golf outing for the Big Dog, instead.

Competition among breast cancer charities is quite common. When push comes to shove, the Big Dogs win the money. And those of us on the front lines, who are actually making a difference, continue to fight for real people, with real problems, and life and death choices in their care.

If you care about the lives of women who don't even know they have breast cancer yet and want to get them screened so they can find their cancer before it is too big to survive it, support the Before Forty Initiative. Just click on the Donate Now button on this page or on the Foundation's website page.

We may be small, but we are scrappy. And because we are actual breast cancer survivors, we don't give up and we keep on fighting. Hell, we're not called No Surrender for nothing, you know.

Tomorrow, maybe we'll start to name names. Nothing personal of course, just business.

Sunday, August 8, 2010

Pierre Auguste Renoir has always fascinated me since I took my first, serious oil painting class as a young girl. Later, studying art history in college, I learned that he never included black in his palette. Instead, he created his darker shadows out of deeper hues of blues and reds. I liked that he didn't take the easy way out, but instead he improved darkness with colors that appealed to him more.

Towards the end of his life, wracked with arthritic pain that crippled his hands, he continued to paint. When asked why he paints through such pain, he responded,

Thursday, August 5, 2010

Anyone who is a regular reader of the No Surrender Breast Cancer Support Forum is aware of our EDGE/CAM. A plan of supplements and dietary changes that can help you feel better and live a long, cancer-free life. It has also been very useful in metastatic patients as some of the supplements ameliorate the side effects of their disease treatment. Of course, as with anything, you MUST consult your physician before taking any drug or supplement.

A new study is out that shows Fish Oil may cut your risk of breast cancer recurrence. The abstract is included below for your review. One thing that the abstract does not mention is that Fish Oil can also improve your skin's texture, elasticity, and can help improve your intimate tissues as well.

Fish Oil is an anti-inflammatory that can help with arthritis and it is very heart healthy!

So, go to the health food store today and pick up some Fish Oil... your body will thank you.

Specialty Supplements and Breast Cancer Risk in the VITamins And Lifestyle (VITAL) Cohort

Authors' Affiliations:1The Fred Hutchinson Cancer Research Center, Cancer Prevention Unit; 2Department of Epidemiology, University of Washington, Seattle, Washington and 3Department of Family and Preventive Medicine, University of California, San Diego, California

Abstract

Background: Use of nonvitamin, nonmineral “specialty” supplements has increased substantially over recent decades. Several supplements may have anti-inflammatory or anticancer properties. Additionally, supplements taken for symptoms of menopause have been associated with reduced risk of breast cancer in two case-control studies. However, there have been no prospective studies of the association between the long-term use of these supplements and breast cancer risk.

Methods: Participants were female members of the VITamins And Lifestyle (VITAL) Cohort. Postmenopausal women, ages 50 to 76 years, who were residents of western Washington State, completed a 24-page baseline questionnaire in 2000 to 2002 (n = 35,016). Participants were queried on their recency (current versus past), frequency (days/week), and duration (years) of specialty supplement use. Incident invasive breast cancers (n = 880) from 2000 to 2007 were obtained from the Surveillance, Epidemiology, and End Results registry. Multivariable-adjusted hazards ratios (HR) and 95% confidence intervals (95% CI) were estimated by Cox proportional hazards models.

Results: Current use of fish oil was associated with reduced risk of breast cancer (HR, 0.68; 95% CI, 0.50-0.92). Ten-year average use was suggestive of reduced risk (P trend = 0.09). These results held for ductal but not lobular cancers. The remaining specialty supplements were not associated with breast cancer risk: Specifically, use of supplements sometimes taken for menopausal symptoms (black cohosh, dong quai, soy, or St. John's wort) was not associated with risk.

Wednesday, August 4, 2010

There are hundreds of locations for a new Mosque/Islamic Cultural Center to be constructed in New York City. Building one less than five hundred feet from where the World Trade Center once stood is not one of them. The location, which houses an historic, Classic Revival building from 1858, has fragments of human remains and pieces of the jet planes still on the roof.

Use the building as a memorial to those who died. Use the building as a firefighter museum. Tear the building down if it is unsafe and build a park where people can sit and reflect on that day, a day that people seem to be forgetting.

Tuesday, August 3, 2010

As Julia Child once wisely advised, "Everything in moderation, including moderation." So, with caution, enjoy that Skinny Girl Margarita, and cut down on all alcohol intake to no more than a couple of times a week. Alcohol is a known carcinogenic. We all have cancer cells in our bodies, dormant or active, and if we can prevent them from growing by changing our diet, including what we drink, then we must. However, check out Bethenny Frankel's Skinnygirl American Virgin Margarita. Same refreshing zing, no alcohol.
Cheers.

Currently the most general non-skin Cancer among American women seems to be breast cancer. Nevertheless novel discoveries have helped increase the number of breast cancer survivors. In fact, at present there are more than 2.5 million breast cancer survivors in the United States. So here is another article that may help scientists get a detailed insight of the disease. If experts from the Brown University and the University of California San Francisco are to be believed, then epigenetic changes to DNA in breast cancers are associated with environmental risk factors and tumor size.

Epigenetic profiles which are the regulation of patterns of gene expression in cells of tumors appeared to have a direct link with diet, alcohol, and tumor size. This findings can possible help understand the environmental factors that enhance tumor development in a better way. Also the results may enable physicians to provide personalized recommendations and efficient treatment decisions to help avoid the disease.

Brock Christensen of the Center for Environmental Health and Technology (CEHT) at Brown University and lead author of the report enlightened, “We undertook this study to help illuminate how diet and environmental factors might contribute to differences observed among breast cancers.”

The study conducted on 162 women were included in the Pathways Study. The investigators measured epigenetic profiles in stage I to IV breast tumors from the study subjects. A detailed investigation of an individual’s demographic, dietary information and breast cancer tumor characteristics was undertaken.

John Wiencke, professor of neurosurgery at the University of California, San Francisco and senior author of the paper added, “This study provides a new window for finding environmental links to breast disease. Our work indicates that we will soon have new ways to monitor and assess lifestyle and environmental factors for breast cancer.”
The outcome was that tumor epigenetic signatures appeared to give a clearer picture of tumor staging and finally prediction of diagnosis. Independent links of alcohol consumption, folate intake (vitamin B9), and tumor size with epigenetic profiles of tumors were revealed.

Sunday, August 1, 2010

I remember an old friend once told me that seduction is a promise yet fulfilled. The excitement found at the moment of being seduced is that one does not know if the promise will be kept. One can be seduced into a love affair, a new car, a friendship or a business relationship. The attraction of the hit AMC series Mad Men is a testament to how the advertising world spends every moment thinking of ways to seduce us, the public, into buying whatever it is they are selling.

This past week, I was asked to be a speaker on a panel at the big Pharma conference held in New York, hosted at Pfizer's headquarters located, ironically, very close to the United Nations. Much like the folks in that building, so, too, must the world's pharmaceutical companies attempt to balance their interests with the interests of the world and try, as best as they can, to first, do no harm.

They deal with regulations, bureaucracies, lobbyists, supporters and conspiracy theorists on a daily basis. They have also been painted, with a rather wide brush, as the "enemy." I find it difficult to view pharmaceutical companies as the enemy because without their drugs, I would not be here today. I also do not believe that they secretly have the cure for cancer hidden in the file cabinet in R&D. Although I have been told, more times than I care to count, that they are not only trying to kill me, but they know the secret of life and are withholding it from me so they can somehow profit from it.

How does that work exactly? They have mothers and husbands and kids who have cancer, yet they are keeping the cure a secret so they can increase their bottom line? To all conspiracy theorists: The CURE will not be one pill or one vaccination and you are safe. Cancer comes in as many forms as our cells can mutate. Should there someday, God willing, be a cure, it will be a drug that one must take forever and it would make more money for the drug company that creates it than anything they could be "hiding" from us. So, please: Stop.

The audience from Pharma wanted my take on how they get their message out. As a patient, patient advocate, and outspoken, opinionated, long day of a girl, I was more than happy to oblige them. I pointed out to them that they are most certainly not helping their "money laundering" image on their web site's home pages because if you look at them, with the exception of Bristol/Myers/Squibb, none have human beings on the page. The first thing you see is their quarterly report, an earnings graph and then maybe some high tech flash graphic of a swirling double helix to remind us they are in the drug business. I emphasized that in order to reach out and touch the people who take their drugs, they need to humanize their images. There are real people at the other end of the prescription pads and they want to know that the company who is making the drug they are about to take, actually cares about them as living, breathing, dreaming beings. I think they heard me. That was most heartening.

If anyone practices the art of seduction, drug makers are right up there at the top. Take this pill and all will be well.... Unfortunately, the FDA requires them to also list all that may not be well if you take that pill. One commercial on television right now spends 10 seconds on how the drug can help and the remaining 50 seconds on all the horrid things that can happen if you do take it. My personal favorite side effect mentioned in a drug ad is "death." They actually say you could die from the drug. Gee, let me run right out and get me some of that.

I suggested to the group that I was not familiar with all the FDA regulations, but if they could add possible ways to ameliorate side effects to their promotional materials and advertisements, it would be a saving grace. One example is known to breast cancer survivors: Aromatase Inhibitors, or AIs. They keep your cancer from coming back because they cut off the estrogen in your body, so your estrogen dependent breast cancer has nothing to feed on and ultimately grow. But boy, do some women have a hard time with the joint pain, body aches and muscle cramps from them. Some are so severe that they stop taking these live saving meds. However, ASCO, The American Society of Clinical Oncology, has reported trial results on several occasions that if a woman gets her base blood value of Vitamin D high enough in her body, through supplementation, she can reduce or eliminate all those symptoms. Wouldn't you like to see that listed after the side effect list on your drug information sheet? I would. And that is what I told them. Guess what? They seemed to have heard me that time, too.

It is refreshing to know that mega-companies like these, actually want to hear what we have to say. Because in the end, they are taking meds too. They want to feel a connection and a sense of safety just as much as we do.

Now, if only I could get some sponsorships from these companies to help the Foundation in its work to support and save women's lives. That would be the greatest gift I could ask for. Because we don't seduce. We give hope. We give the facts. We ultimately make your life better, fuller and last longer through education and information and advocacy.

Support Our Foundation

Welcome

The No Surrender Breast Cancer Foundation is here to help every woman who has ever been touched by breast cancer. We offer a 24/7 peer driven support forum, it is by survivor for survivor - for you.
Our comprehensive website has everything you need to learn about your cancer so you can make the best decisions for your care. We offer the latest information on surgery, reconstruction, chemotherapy, hormonal therapy and radiation and, most important, how to live the best life after breast cancer, because yes, there is life after cancer!
Our programs are designed to save lives through early detection, self advocacy, and changing the standard of care so that women can protect themselves.
For more information, please visit our website to learn about No Surrender Breast Cancer Foundation... hope happens here!